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Wednesday, January 4, 2012

Alli vs Rodriguez *DING DING*

So that whoever reads this understands how frustrated I was...I will go into very graphic detail and tell the entire story.

WARNING - If you don't want to know graphic details of Crohn's, if you don't want to read of nastiness, then I wouldn't go ANY further. Sorry...I have written many a time on here, that this is my blog, my testimony, and I want to tell the truth...so when I am healed, everyone can see how Great and Awesome and Mighty my God is! (Seriously though....nasty stuff, so I am sorry)

*The start of it all*

Well I guess I can say that everything started around December 22-23. Most of you know that I don't have an appetite. People can say what they want....that I need to do this and that, but when you have Crohn's, your stomach and intestines, becomes your brain. When it says don't eat...you don't, when it says eat...you do, when it wants this...you eat this, when it says eat that....you eat that. It's VERY specific. Ok....so I don't hardly eat....but also I can't help that. Well...stomach cramps and gas are normal with Crohn's, but shouldn't exceed a billion times a day. I will just say that the frequency INCREASED greatly. Then it started where I was literally dashing from the couch, tripping over the dog gate to get to the toilet as fast as I could. I would have diarrhea and then I would come to the couch and lie down. Then I would munch on something, and before I knew it, I was dashing to the bathroom again. This continued. As I continued to go to the restroom through I noticed changes. For one thing...the past year and a half my Crohn's has been on the other end of the Crohn's spectrum....I have been having the constipation and impaction. So when I went from that to the other it was a questionable change. (meaning impaction/constipation to loose stools/diarrhea)

Well changes just kept happening. I then noticed that I was having mucus and discharge. Everything was yellow and green....and worst of all I was not digesting my food. I was literally passing fiber strands. At times I would go to urinate and before I knew it I was doing the other without even knowing. At other times, I would find myself needing a bucket and I was so scared what happened back in March 2010 would happen again! Throwing up *you know what* at the same time your using *you know what* on the potty is NOT a fun thing. I would quickly down phenergan to avoid throwing up! It was getting ridiculous...I was using the bathroom more than I was putting food in my body. By the 30-31 I had gotten to the point where I wasn't even eating because there was no sense....all it would do was go right through me. Between the 22 and the 26th I was trying to see if everything would just settle. I was trying to wait it out and not just freak out over the changes. After that fourth day though, that is when the calling started! and by that time, I was calling because I was worried!

December 27th - Called Rodriguez's office. To get Rodriguez to call, you have to leave a message up front with the receptionist, who will then in turn send him a message. So I call and tell them my name, my number, and then *because I did NOT want to go into the gross details* told them in the note to type "serious complications from Crohn's Disease".

December 28th - Called the receptionist. I asked her if he had checked my message...she checked and said that Rodriguez had checked, read, and even called her, and asked a question pertaining to the note. She assured me that he would be calling me before the end of the day.

December 28th (after they had closed (5pm) which goes to answering service and on call doctor) -
I leave a message with the person answering...I tell them EVERYTHING up to that time, as well as all the signs and symptoms that I was suffering from. I stressed my worry about dehydration, and they said that the on call doctor would be calling shortly.

The on call doctor called...Dr. Dascher (sp?). I told him EVERYTHING. He said that he had looked over my chart and that I had a very hard case. He also brought up the fact that I did not just have Crohn's Disease, but Fistulizing Crohn's Disease. We talked about the s/s and then he agreed that it was not good. He said his first concern was that there was possibly an infection in my intestines (caused by Crohn's) and he was also concerned that there could be an obstruction or blockage (also that some stool and digestive fluids were being able to move, while others were being trapped). I stressed my concern about dehydration, and he said to hydrate myself as much as possible and try my best to STAY OUT OF THE HOSPITAL...because the next morning at 7am he would see Rodriguez and would tell him EVERYTHING that was going on...and then they would be setting up procedures and appointments to figure out what to do.

December 29 - Well I should have heard from Rodriguez since Dr. Dascher was "going to talk to him first thing that morning at 7am"...but I didn't. I decided to be nice and give him A DAY.

December 30 - I am boiling! I have literally been going nonstop to the bathroom for a WEEK + DAY now....not being able to take hardly any food in and if I was taking any in, it was going right out! I call the office that morning. I talk to the receptionist and she was amazed that Rodriguez had never called. She said she would make sure to get something out immediately and inform them of what was going on (the entire ordeal). Well later that day I went to Andrew's. I get a phone call from mom and Rodriguez DID NOT call, BUT his nurse DID! His nurse was not very nice either. When she called she asked mom..."Well what exactly signs and symptoms is she having?" Mom politely told her all the nasty and the nurse replied "Well if she is not bleeding from her rectum, and if she is not throwing up, it is NOT an EMERGENCY". When mom said that I about blew a gasket! For one, I DO BLEED from my rectum, but I thought that was NOT an Emergency! I think any of you who read the s/s know that what I was going through was an emergency...it doesn't take a rocket scientist to figure that out!

The nurse then goes on to say "Well Rodriguez is covering for six other doctors and this is a holiday weekend, couldn't you have called when it wasn't so busy." That was when mom got a little hot and said "My daughter has been calling you for almost FIVE days now...and her symptoms have been going on for over a week!" The nurse didn't say too much after, and set up the appointment for January 3 (today).

As most of you know, the next day I ended up having to go to the Emergency Room. I cannot explain the state I was in. It was so sad though...because I knew what I was feeling, and I knew I needed to go...yet, I've gotten to the point where I tell myself "Oh, Allison, you don't feel that...that doesn't hurt...just believe it's not there"...I really get to where I can make myself believe I feel good...I've literally put a wall up with myself because of other people!

(New Years @ Jackson Hospital)﻿

They pumped me up with Saline boluses at first, and then after the boluses, a constant saline drip, antibiotic drips, Solu Medrol pushes through my mediport, Lovenox shot to prevent blood clots, Demerol/Percocet for the stabs, cramps, and migraines! I was very blessed to meet Dr. Haa (sp?) and I was very impressed with his bedside manner, his knowledge of my disease, and his empathy towards me! He was very helpful and very understanding! I truly thanked God for blessing me with him, because Emergency Room visits are not the most memorable experiences...his however will always be remembered with positive thoughts!

so released and a bunch of blah blah blah.

Now for today - what you all have been waiting for! Sorry that I had to tell my book to get you here, but I figured you needed the truth of all of it...and facebook doesn't need to know all of my business! Those of you that really care will read this on here, and I want to be honest with you and tell the truth....it IS your business! so yay for you! lol!

*DUN-DUN-DUN-DUNNN*

Mom and I are sitting there anxiously awaiting Mr. Ponytail and he walks through the door. I quickly grab the scissors and chop it off! (ok...no this really didn't happen, but I was thinking it over quite a lot)

So he walked through the door and it was immediate tension. He knows me too well and he knew that I wasn't happy nor was my mother. He started off asking what meds I was on and what I was in for. I quickly started off asking about all the mishaps. About me calling him, him not calling,etc.

He said #1-that when I leave messages with the receptionists up front, I need to be specific. I was ugly and said...."what do you want me to tell them, that I'm pouring yellow, green slime and fiber out of my butt" (HAHA....SORRY I HAVE TO LAUGH) *he didn't look very happily at me and said* "No....you are a nurse still Allison, you know how to word everything, and you know what to say...be specific...they are not nurses, nor do they know anything about all of this...they have to be able to let me know whats wrong so I know what to call about. All I knew was that you called and needed me to call you." (I don't know how much of that I bought. Also, I did tell him that I told them to write the serious complication thing) (but I will halfway buy that)

He said #2- that Dr. Dascher told him that he had talked to me...and that everything was ok! He quickly saw the look on my face on that because I called bluff! I said ummm...noooo! and then I told him the conversation. He then said that he would take care of that and would have a talk with Dr. Dascher!

So moving along, he was glad that I went to the hospital and he was happy with the meds they gave me and the way the Doctors handled the Crohn's.

Next, he got on to me. He began on the weight thing again. He knows my appetite and he knows that I don't eat hardly a thing. He understand to a certain aspect I cannot help that...and with being my Dr for 2 years he knows we were going to have to go where most Crohnnies don't. He told me that I had to start eating - so he said 6 small meals a day. I about started crying, or wait I did. (Until you have this disease you don't realize how hard it is to eat....I HATE eating. It's a chore, it makes me feel bad, and I can only hold so much....if I try to take one more bite after I'm full, I will throw up.) So he decided it was time for medicine. He said there were two types of meds he could give me...they are medicines that you give to cancer patients when they cannot eat or do not have an appetite anymore. He gave me the lesser one because he said we weren't going to go with the drastic one yet. He said that if I cannot do the six meals on my own, then I needed to start the medicine. He said that it would make me very drowsy and sleepy, but that if I'm not going to increase my eating, then it's what we are going to have to do. He also said that I would more than likely get use to the drowsiness with time.

Another thing I brought up to him was the erythema nodosum. I confronted him about me calling two months ago when I had another erythema nodosum outbreak. When I had called and left message for him to call about it...he never did. Instead his nurse called and said "he said you need to go see your PCP" This made me mad, because Erythema Nodosum is an extra-intestinal symptom of Crohn's....it is my gastros job to treat it! Also...when I had my outbreak the last time, he said "If this happens again, we are going to have to start you on the only medicine for these outbreaks....it is a leprosy medicine".

He didn't say much and kind of changed the subject and then was like "well I am going to write a prescription...that way the next time you have an outbreak, you can fill it and take it"

On that note, isn't that pretty neato...LOL! Leprosy medicine...who would have thought there would be leprosy medicine around still! He did say however that the pharmacist would probably have to order the stuff since it was rare! Oh boy - I'm becoming a rare jewel! LOL! (Ok...I'm stopping now :) )

There was a lot of changing subjects, and a couple of angry parts between us, but all together, he did do a good job and I was SLIGHTLY SLIGHTLY proud of him answering himself and doing the few things he CAN do for me!

Now on to the last subject...the one I need yalls help with (if anybody has read all of this)

As many of you know....and as I have written a billion times before...the two blood tests that you can check to see if the Crohn's is in control or not is a Sed Rate and a C Reactive Protein. Like I have written before as well, these tests can be FALSE for Crohn's patients. You can be in a flare and the labs normal. Rodriguez had told us about this in the beginning. If I'm not mistaken also...when I had my colonoscopy and was all nasty inside and diagnosed with Crohn's...my labs were normal. But then again, my numbers have always been normal when it comes to those labs! What I'm trying to say is both of these labs with Crohn's can be very FALSE...so you can never judge where you are with your Crohn's by them.

Well...the problem is we need these tests to be elevated so that we can get my treatments either 1. moved from 8 weeks to 6 weeks, or 2. changed from 5mg/kg to 10mg/kg, or 3. BOTH!

Now I will say that Rodriguez has been busting his butt to get my Remicade treatments increased and cut back, but insurance will NOT let him because they want to see labs!

Mom brought all of this up again to him and got emotional...she told him how Mrs. Sharon's son (people we know) literally almost died from the Crohn's (just never got better and kept getting worse) and finally his labs increased and they were able to change the treatments...since then he has been a new child! When his mom talks about it, it will make you cry. She literally thought she was going to see her child die...and then when the treatments changed, she said it was like night and day difference! He lives a normal life now! So mom truly believes if we change mine, I will get better! Rodriguez went over it with her again, and we all got frustrated!

He said, "I know she is sick, that she isn't better, that her Crohn's is not controlled, that her signs and symptoms show she is not better." He then said "and I'm the doctor knowing all of this...but it doesn't matter..." then he went on to say...The thing is you have your insurance people sitting behind computers looking at numbers wanting them to be elevated...if they are not then it's not good enough and they will not allow (or pass/ok) the doctor to change dosage or frequency." So then mom got upset at insurance!

After he left the room I just sat there and looked at mom. I was like you know what this is....a BIG vicious cycle! The infamous lines "You are very sick, oh wait, there is nothing we can do for you."

Then I started getting pumped up about raising awareness. I mean come on. I have a disease...I have exhausted every pill, treatment, and option. There is no more for me to try...there is nothing else we can do, and yet I have to live with this for the rest of my life! I can handle this because I have Jesus by my side, and I know that He wants me to carry this burden for right now!

What I CAN'T stand...is that others have this disease. Sure, not everybody has a severe case like mine...but still. Eventually everybody is going to hit a spot with this disease where they feel stuck...and for those in my boat they are TRULY stuck! We have got to raise awareness, we have got to start telling others that this disease is serious, that it is debilatitng, that it is hurting people, taking there lives away, and that we NEED A CURE!

Ok...so I was having my boosting up time :)! Now on to your help again...this is a WEIRD prayer request, but please.....PRAY THAT THE SED RATE AND C REACTIVE ARE ELEVATED! We NEED the treatments increase or cut back...we have GOT to kill my immune system more! My white blood cells are still attacking me pretty good so we need to wipe them out more! So yes...pray for abnormal labs, lol! It will be a great help to us and my doctors!

Thank you for reading, I know it was ridiculously long, but if you know me, I tell it all and tell it just like it happened! I'm like a bad storybook! LOL! I love you all and thank you for your love, prayers, and support! God is always right beside me through it all and I thank Him for loving me past my faults and failures! My God is an Awesome God! and I know without a shadow of a doubt, He could speak "Be Healed" and my body would be transformed! I know it! I also know that as of right now He has called me to be His soldier, He has called me to do a mission, and I must complete my mission! After I have completed I know He will reward me....if it is in Heaven, then it is in Heaven! I know where I will be one day, and I know where I will spend my eternity. If an eternity in Heaven rejoicing with my Father means a life on earth with pain and nausea, all of this is worth it and more!

I'm going to keep on fighting! I love you all so very much! God Bless!

4 comments:

I do not know if this would even be a possibility with your insurance but I work for a Health System here in east Texas and we have a gastro doc that is out of this world. I know several people with Crohn's that she has done awesome things with. Maybe your doctor could contact her about reviewing your file and just see if she sees something different. Her name is Kai Xia. Her office number is 903-510-8718. Her nurse is Melissa and their address is Trinity Mother Frances Hospitals and Clinics, Gastroenterology Clinic, 910 E. Houston St. #550, Tyler Tx 75702.

Amanda! Wow, where do I start! First, this sounds awesome! I would even like to just call and give her my signs and symptoms because I have so many and some that most Crohn's doctors never here with there Crohn's patients! Do you think maybe I could call and talk to the nurse and maybe just tell her what was going on and then get Rodriguez to call! I am up for anything, because I just need options! I need something! Two of my doctors are pushing me to go to Mayo and that is just too much money! Thank you so much for writing...when I read it was just like Thank you Lord! Thank you! Let me know what you think! I appreciate you writing so very much!

I'm sorry I've been sick and staying off the computer for a few days. I would call her office for sure. I would say that with everything you have been through, what would it hurt? Her nurse Melissa could at least guide you and let you know what they would need to review your case.

I might be grasping at straws but I could not imagine going through what you are living.

"He's Still Working On Me" A Little Bit About Little Me

I created this blog to tell MY story to anyone and everyone that God desires.

Age 6: I accepted Jesus Christ as my Lord and Savior. I was introduced to my first love, my strength, and my best friend. My life changed!

Age 18: I met the one my heart desires. Andrew James Hope. I was introduced to my companion, my confidant, and my soul mate. My life changed!

Age 21: I was diagnosed with an incurable disease. Crohns disease. I was introduced to pain, decisions I never thought I would have to make,
and something I would never be able to rid of. My life changed!

These are three key points in my life that have added to the foundation of who I am today. Briefly I will tell you that my Crohns is very specific in the sense that it is not like all the other Crohns cases. My case is almost to the point of being termed untreatable; therefore, physically I am in pain and mentally/emotionally I am exhausted. So to say things are hard right now is an understatement.

However! I AM receiving blessings daily! God is seeing me through this as well as Andrew, my family and my friends!

*If you are a follower of my blog and you are suffering with a disease that needs more awareness, leave me a comment and let me know! We will place your ribbon, disease, and name on the wall! God gives each of us a journey! Everyone's journey in life is different! Let's bring awareness to these terrible diseases, disorders, syndromes, etc. and ultimately together FIND THE CURES! God Bless!